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Permalink Reply by Alanna on September 1, 2009 at 9:13am

I've been living with SCD so long, that I no longer view it as an issue, just a part of life. I'm a 28 year old, second year grad student, working as a grad assistant and a substitute teacher. I've been blessed to have employers and colleages at the university who understand and work with me. My substitute teachig job is flexible and it allows me to come when I can and get treatment when I need to. For the past 5 years, I've been getting procrit injections once every 2 weeks and they have made a noticable difference in the amount of hospitalizations I experience. I've also been on a once a month schedule with blood exchange transfusions which have helped me with my crisis and leg ulcer problems. The few crisis that I have experience have been managed at home (unless a fever was involved). My quality of live is great, I know it seems like I spend a lot of time getting treatment, but it's worth the sacrafice if I can avoid hospital stays.

My family and friends have been my support system. If I'm having a problem where I can't cook, my mom will cook for me and make sure I have enough to drink. She has been the one there through EVERYTHING, so she always knows exactly what to do. My sisters usually gather things for me when I'm in the hospital and do my hair, and since my father and my brother live in another state, they usually spend time on the phone with me when I need them. There are times when I feel a little depressed because I spend a lot of time in treatment alone. My family can't always make it to my treatments with me because they have to work or go to school. It helps to develop relationships with the nurses and staff, they've also become a great support system and they encourage me to move forward with my graduate studies.

At the end of the day, I'm just another female. I have the same insecurities and frustrations as any other female without SCD. I'd like to excercise more, and I can, but the key is that I have to do it at my own pace. A lot of times, I like to try to live like I'm a completly healthy individual and the reality is that I'm not. Excercise is something that I have to take very slowly and ease into. I get frustrated because I have to start my process all over after I have a crisis. I'm still learning to balance eating better as well. Drinking PLENTY of water is a big thing for us. I'm not too worried about nutrition because I take an Iron free multi-vitamin everyday.

I hope this helps you with your research. I know it's a little lengthy, lol. This is just a little about my experience with SCD. Please feel free to message me if you have any questions.

Permalink Reply by P.Allen Jones on September 7, 2009 at 2:30pm

Thanks Alanna. This is great info and will help in our final answer.